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Posts posted by barefut

Well Congratulations Shelley and ISN! Mere words are insufficient to describe how much you, ISN and all of its members have touched the lives of so many! Keep up the outstanding work! Many more successful years to come on our way to a CURE!

Well tonight is the night. (We were snowed out 2 weeks ago and had to reschedule) I will be sitting with my 7th grader next to his masterpiece, tri-fold, cardboard, stand-up display on, "A Day in the Life of My Mom".

All 200-ish 7th graders' boards will be displayed in the gym and tonight at 6:30 families are invited to browse the displays. Each student chose a topic, did their research and constructed their display board with regard to how their topic relates to their personal family culture and/or the culture of our community.

I was surprised and proud when my son told me he wanted to do his on scleroderma, and prouder still when he stuck to the topic when all of his friends were doing theirs on sports.

I must say he did a wonderful job and with the help and support of Shelley and her generous scleroderma awareness care package, it turned out great! He got 60/60 points for his oral presentation. The overall project has not been graded yet.

I am looking forward to tonight but at the same time, I feel a little nervous about letting the whole community in on my disease. My close friends already know. It will be interesting to see how others receive this information. I will let you all know how it goes and post some photos as well.

I had a good looking mammogram and sonogram. So I am relieved about that but I have breast pains that have been persisting for months - maybe even a year - I am bad at guesstimating as well as writing the onset of these things down.

All I can think is sclero-related? Collagen found a new hangout? Anyone else experience tender spots, aching, tingling (almost like lactation let down) and sharp shooting pains? Also sometimes feels like swelling.

Craig's reply is awesome - I myself have used nitro cream and I take calcium channel blockers. My rheumatologist can't stress enough how important it is to keep your core body temp warm as well since a chill can send you into a Raynaud's spasm.

I tried keeping my nail just long enough to protect my fingertip when I had my worst ulcer years ago. It helped because I could not stand any kind of slpint or bandage on it - too painful.

I never even noticed my face tightening in the beginning until I had something in my eye one day and I could not pull my lower eyelid down like I used to. I noticed "smoker's lips" first with my mouth. I have one deep wrinkle on my uper lip. The other sign I had was when I could not open my mouth wide enough for the dentist - and it was very fatiguing to keep my mouth open at all for him.

But before all of this I experienced the sensation of cobwebs on my face. It drove me nuts! I was always reaching to pull imaginary webs off of my face. Bet I looked pretty funny.

Anyway, these were the first signs and symptoms of my facial skin tightening. I thought it might be helpful for you to know.

Just wanted to let you all know I had my mammogram on Tuesday and all looked good. However, I am also having a sonogram to check for inflammatory breast cancer as I have had some tenderness and swelling and an unusual shaping to my left. Saw my family doctor and got some bloodwork done as well. That was also yesterday and I have not yet heard back from them so slow news is good news.

Inflammatory breast cancer will not show up on a mammogram so a sonogram is the next step and then MRI. I'm sure its probably just sclero related tenderness but since I have been on Cellcept for nearly 5 years it puts me at risk. Better safe than sorry and inflammatory breast cancer is something you do want to catch early. So something to think about girls.

I've been feeling the same the past few days. I like Janey's idea of curling up with the cat for a good cry to get it all out of your system and relieve some stress. It really does help to release the floodgates. We need that from time to time.

When I was first diagnosed I talked to a counsellor. She was not much help but it was good for me to at least have someone to talk to about everything who would not freak out or judge me. I was looking for a counsellor with a more proacative approach and she just sat and listened and wrote.

Also be aware of depression and if you can't pull yourself out of the blues within 2 weeks, it's a good idea to talk to your doctor. Scleroderma gives us a lot to deal with emotionally and there is nothing wrong with getting help in the way of therapy or meds.

Your last post has me in tears. I am so sorry you have to have a mastectomy but it makes my heart happy to hear about all the wonderful people and support you have around you. Thanks for sharing your story. I have not had a mammogram in over 5 years. I am making my appointment on Monday.

Sweet ~ I retreat to the bathroom too! And do the exact same thing! Ha-ha! It's either that or collapse in front of everybody.

Shelley ~ I survived! The best preparation was yours and Jeannie's cleaning methods and a glass of wine! My sister, bless her heart, was a huge help and I was able to relax and visit with new freinds.

Now, to get through one more....I have just decided to not put the pressure on myself to decorate the house, put up outside lights, cook from scratch...its the best gift I could give to myself even though I miss doing all those things.

I also think you should see your doctor about it. I too have the leg pain/fatigue - feels like burning and cramping. Exercise gets harder for me not easier as you would think it would! It's like I am fatiguing my muscles instead of building strength and endurance. BUT I still gotta move so it's a struggle.

I get that too - never knew it had a name. I also have recurring bouts of vertigo that can last anywhere from an hour to days and vary in intensity throughout the episode. Once had it so bad upon waking I crashed into the hall wall, slid down to the floor and that's where I stayed until my mother in law came to the rescue. Really weird! And not fun when it triggers vomiting too.

I will have to look up labrynthitis to learn more. I'm sorry you are suffering with it. Dizziness and nausea are awful!

My sister will be here in 2 1/2 hours and I am working on a combination of Shelley and Jeannie's methods this morning. Not gonna waste energy on a shower as I took one yesterday and my hair doesn't look too bad this morning. Gonna put the boys to work on the living room while I tackle the kitchen and bathroom but first I gotta have that cuppa!

My weepies never did turn into a full blown cry yesterday. I hate it when I "feel like crying but the tears won't come" - that is in a song isn't it?

Anyway, thank you all for your replies and support. I've enjoyed reading them this morning. You all have given me just what I needed to get through my day!

Easier said than done this time of year. I feel over extended and I haven't really even done anything to speak of. Have had a lot of revolving door traffic though with 3 snow days this week and kids and friends coming and going. Just having to be "on" sometimes is exhausting enough.

I had a wonderful Thanksgiving at a friend's home and will be having my sister and her hubby and 3 neighbors over tomorrow. Sis will help a lot but I stil have to clean the house before everyone comes. The boys do help but you know...

So I don't know but for some reason I feel like crying today. Plenty to be thankful for, for sure! I guess I may just be feeling overwhelmed. Not just with holiday stuff but the same old same old sclero stuff wearing me down.

I hope you all are finding ways to combat the blues and the blahs this time of year. I'd love to hear how you are coping.

Boy some days I feel like that too. I have all the restrooms in my town mapped out. The worst thing was when I was still working at the bank, in the mezzanine of a funky grocery store in a busy uptown location, our only restroom was also the public restroom in the hall! At least there was a mens and a womens and I never thought twice about using the mens room! Still, sometimes I had to wait. When I was not waiting, someone was waiting on me. It wasn't fun to come out of the mens room to a line of impatient men! One day though, a man came out of the women's room and I smiled. He says, "Hey, any port in a storm" cute, as we are a seaport town. I would always return to a line at my teller station and/or dirty looks from my customers and co workers. One of the big reasons I am no longer working.

My heart goes out to you and I sure hope you find a solution that fits you very soon!

We are in the beginning stages of the project right now. I have an informational meeting tonight at the school regarding the Culture Fair.

One of the things I will ask is, would it be okay (not tacky?) to have an ISN donation box on the table with his display? If so, can you tell me how to get one? We also want to have some bracelets available. Hey! I need to get us ISN T-shirst too! I'd better make a shopping list...